Transitioning NF1 Care From Childhood to Adulthood

In this segment, the physicians explore the challenges and priorities involved in transitioning patients with NF1 from pediatric to adult care. One physician describes how his center follows patients from infancy through adulthood, while noting that many institutions must formally transition patients to adult providers. They emphasize that adult NF1 management requires a shift in focus: during childhood and adolescence, the primary goal is supporting school success and monitoring for complications such as optic pathway gliomas, plexiform neurofibromas, and spinal cord compression. After age 18, however, additional adult-onset risks emerge, including cutaneous neurofibromas, malignant peripheral nerve sheath tumors, and significantly increased breast cancer risk in women beginning around age 30. The conversation highlights the importance of comprehensive screening—often with full head-to-toe MRI—to establish a clinical baseline during transition. Yet many adults arrive without prior imaging or education about NF1-related risks, requiring providers to deliver extensive counseling on surveillance and long-term disease management.